Peritoneal cancer

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Oesophogeal cancer with Peitoneal mets - stage 4

ydm161
Posted by

Hi ,

my husband was diagnosed in Feb 2017, he underwent 6 cycles of EOX followed by 5 weeks every day of Radiotherapy and Capecitabine.  He responded well to the treatment the tumor reduced from 21.5cm to 4.5cm before radiotherapy which then seemed to shrink/burn it away.

 He has about 5 months of feeling almost back to normal, then he began to feel unwell again, a scan discovered fluid on his right lung and this was drained (3.5ltres).  A further scan in November 2018 showed deposits/tunours in his peritoneum.  We tried to be considered for a trial but nothing was available so we were told.  Eventually in Jan this year he started Cisplatin with Capecitabine which made him so fatigued and unwell that after only 2 cycles we were told he wasn't working.  So after a months break he started on what our gynecologist said was his last option chem - Plaxitaxel.  Not sure why it's the final option?  He's half way through the 6 cycles he's very breathless, no appetite, everything tastes strange,gets arthritic pain in his joints,  feels sick and his bowel movements go from one extreme to another.  To top it all he is peripheral neuropathy from the first lot has come back with a vengeance .

the last scan showed the deposits had reduced in size but there is a small amounts not of fluid (about 1litre ) now in his left lung.  Fortunately there is no evidence of spread to any other organs.

i have tried to find out if there was anywhere that would consider him for HIPPEC but it seems the only option in the U.K. Is for people with ColoRectal cancer and peritoneal mets.  There is a trial in Lyon France that are currently doing HIPPEC  osophogeal cancer with mets .

He gets really angry and snappy often these days, understandably- he's not got the fight he had, he now has a Palliative Nurse who is amazing, but he just feels more like he's losing the fight.

does anyone else have experience of this?  Any recommendations?  We are not ready to give up the fight yet.

SkippySue
Posted by

So sorry to hear of your husband and his secondary peritoneal cancer.  I too have secondary peritoneal cancer - from a uterine sarcoma - unheard of.  I did get excited when I read about CRS followed by HIPEC - seems such a sensible idea.  Unfortunately like you, I do not qualify for this treatment even though my nodules are localised and I do not have any mets elsewhere.  I go back to the consultant next Thursday (15th August) to find out what they propose to do.  So far I have not had any treatment and the nodules have increased both in size and number.  I was first diagnosed with cancer in August 2018, had surgery in September 2018 and then the peritoneal nodules were found on my first post op CT Scan in April 2019.  

I really feel for your husband, it is one thing putting up with the side effects of treatment if it is doing some good but when it is not working, it must feel pointless.  My oncologist won't even consider chemo as he says that it is very unlikely to work and would just make me ill.  He is looking at other options that hopefully we will find out about on Thursday.

I am not surprised that your husband is feeling snappy but good that he is not ready to give up the fight.  I feel much better if I am doing something so, mad as it may seem, we are about to embark on a loft conversion.  We need it for prospective grandchildren but to be honest, it is really planning for my husband's future without me.  I want my daughter to feel that she has a place of her own in our home where she can easily come and stay with her wife and children, a place where she can leave clothing and belongings; the loft conversion with be a mini self contained flat that will be just for her and her family.  My husband will need support and this will make things easier.  Your husband is probably thinking of how you will be if he goes, we all have to go sometime, if he cannot see solutions, then he will become upset and snap and those he loves the most.  

I find it very difficult to talk about the future with my husband, but when we do, it makes things easier.  I feel happier knowing what he plans to do.  It is a hard conversation but it needs to take place.  I feel that I am being negative, but I am just being realistic.  I will jump at treatment opportunities - I have a grandson to be born on September 20th and I intend meeting him.  I hope to be there for his first birthday and will do all I can to make sure this happens, but it might not.

You just need to be there now for your husband and try to talk, not brush things under the carpet and hope that they will go away.  Also do things together and build precious memories.

Thinking of you at this difficult time.

Sue x

Live life to the full.
ydm161
Posted by

Dear Sue 

thankyou for your message ,   You sound a wonderfully strong lady.     I would recommend you push your Oncologist for treatment-  my husband has now had 5 of 6 cycles of chemo again -this is the final chemo option for him.  His scans have been positive with reduction in size of the deposits in the Peritoneum.   No further visible cancer either, however he has had Ascites in his pleura some of which has been drained - but in last 3 months that has stabilised and reduced slightly.   The side effects are not nice and he struggles with breathlessness, nausea, constipation or  diahorrea , peripheral neuropathy and his nails on hands and feet are badly affected.  His emotions are like a roller coaster understandably.

however we do use alternative meds.  If you

wish to know more you can contact me at 

ydm1951@live.co.uk  

kind regards 

Yvonne